Curious to hear NICU nurses perspective--23-wkr, NEC m

she.lpn · Sep 18, 2006

WOW! What a heartbreaking situation. While I am not a NICU nurse. I am a nurse and a parent of a preemie who may not of had the same situation but in the end I had to let him go. I can't say the parents or the hospital is right. But how can the hospital just stop and withhold care? That is not there child, I was given a decision and I made the decision to stop care on my baby. While maybe the parents have a clouded sense of having a miracle happen to save their baby, its their decision. At least in my opinion. I have to wonder if they know their baby is suffering, and if they realize that even though she is still "here" she may actually already be gone.

It will be interesting to see others opinions and see what will actually happen.

EricJRN, MSN, RN · Sep 18, 2006

NEC and serious prematurity con both be so sad to see. Must be a tough situation for all involved.

BittyBabyGrower, MSN, RN · Sep 18, 2006

I read most of the blog....these parents have a lot of anger and this kid has had a rough road. For a major medical center to call an ethics committee, this kid must be bad. Also, I find it very hard to believe that they aren't "feeding" her any IV fluids, so I think that we are only getting a very angry and helpless parent's view. As for going to the media...that is a bit much, IMHO. And also, if all these other hospitals are refusing to accept this baby, she must be very bad off. We have had kids on the transplant list for Pittsburg and there is very strict criteria they have to meet.

If this poor little one had a really bad head, and a really bad gut, then it may be better to let her go. They can take her home on hospice if that is feasible, but it sounds like they are very angry and not ready to make this decision.

she.lpn · Sep 18, 2006

I found more of the Blog that I think was cut out here:

http://blog.myspace.com/index.cfm?fuseaction=blog.view&friendID=79481063&blogID=164112043&MyToken=8bdc119f-2ea7-4fb5-a863-a7ccde6dbec4

This kinda makes it sound even grimmer. Feel sorry for the parents and yes they do sound very angry and it is a one sided view.

BittyBabyGrower, MSN, RN · Sep 18, 2006

Oh man, that kid has it bad....I looked up the Ann Arbor News article and they mom said that they are feeding her "sugar and salt"....that tells me that this poor kid's liver is shot also from the TPN...that usually goes hand in hand with bad gut, esp when you have no small intestine. Sad.

ginger58, ASN, RN · Sep 18, 2006

Having worked in NICU for a decade and now palliative care I feel for the family. But the reality of it is this is a very sick premie and an ethics committee wouldn't be called unless they felt there was nothing more to offer. As far as feeding and fluids, I have found in adults that when the body starts shutting down a person loses their hunger and the body isn't needing these things. More so in a patient with an impaired gut. They must feel this is a terminal case and that the kindest thing is not to stress her body with any more treatments. Moving the baby to another facility would be a big stress. The one thing I have learned is that docs can refuse to carry on with futile treatments if they feel there is no hope. I am so sorry for these parents and the baby.

dawngloves, BSN, RN · Sep 18, 2006

It's hard to say, just reading second hand from a person with no medical background, what the baby is going throught right now. But my guess is that if no other hospital will take her, that her prognosis is very grim. And that is sad.

km5v6r, EdD, RN · Sep 18, 2006

I am not a NICU nurse but I do currently work in PICU at a transplant center. Most of our pt population is somewhere in the transplant process either eval or post op. This center takes the kids that many others centers will deny. One of the hard and fast criteria for a small bowel transplant is that the child must be off the vent. An isolated liver transplant will be listed if on the vent but a small bowel transplant candidate must be extubated. This baby is a long way from becoming a transplant candidate.

While no one wants to acknowledge it the fact remains that resources are limited. Tremendous amounts of resources have been committed to this child but there does come a time to stop. IMHO the ethics committee is trying to stop doing things to this babe and start doing them for her. Even if that means withdrawing care. It is not a matter of the medical community not want to accept a less then perfect child. It is a matter of not be able to repair or change irreversible damage. The body can not survive without a small intestine or liver. This child's body is not appropriate for transplant.

The blog complained of the U of M docs "talking the other docs out of taking her". I have been involved in some of those phone conversations. There is no "talking them out of it". Facts are given, condition, history, current levels of support etc. Lab and x-rays are reviewed and the decision is made. If you have nothing to offer then why put the child at risk of a transfer? It is a tragic situation for all involved.

Gompers, BSN, RN · Sep 18, 2006

Oh man, that kid has it bad....I looked up the Ann Arbor News article and they mom said that they are feeding her "sugar and salt"....that tells me that this poor kid's liver is shot also from the TPN...that usually goes hand in hand with bad gut, esp when you have no small intestine. Sad.

From what I can tell, it sounds like she's on D10 Lytes or something similar - but not because of her liver. It's because the docs, ethics committee, and courts have decided on pallative care only. They stopped the TPN and blood transfusions. They are keeping her on narcotics and the ventilator because the parents do not want to remove life support. By providing IV fluids (even if it's not TPN, dextrose alone is considered nutrition so legally they're in a safe place) and mechanical ventilation, they are just supporting her life until she passes naturally, it sounds like.

The parents blogs and the newspaper articles - you can link to them all from the original post's link - give a lot more information but you have to really read everything closely. They keep saying that she's proving them wrong because she hasn't died yet. Yes, it is true that many micropreemies with devastating NEC pass quickly, it doesn't always happen that way. We've all seen plenty of them survive with absolutely NO gut, like this baby. Short term survival is possible, yes.

But the thing is, a 23-weeker is most likely not going to have a healthy brain or lungs and these things can keep her off the transplant list should she survive long enough to grow to the proper size needed for the surgery. So in the end, even if she survives now, without a bowel and liver (which she of course will need by then because she'll absolutely have to live on FULL TPN, not just partial) she won't survive for more than a couple of years.

I have seen this kind of thing a lot at work - we probably all have. I understand about wanting to spend as much time with your children as you can, and not "giving up" by taking them off life support. But after seeing too many babies die a very painful death from liver failure, it just breaks my heart to see cases like this. It's an absolutely horrible way to die. And without a transplant, it WILL happen. Without any small bowel left, there is just no way....

The thing that bothered me the most, for some reason, was the part of the article (one of them) that mentions that this little baby (33 weeks corrected gestational age right now - still a preemie) is smiling at people already. :rolleyes:

Gompers, BSN, RN · Sep 18, 2006

The blog complained of the U of M docs "talking the other docs out of taking her". I have been involved in some of those phone conversations. There is no "talking them out of it". Facts are given, condition, history, current levels of support etc. Lab and x-rays are reviewed and the decision is made. If you have nothing to offer then why put the child at risk of a transfer?

I have seen this happen, too. Yes, second opinions are sometimes necessary and valuable. But in cases like this - a micropreemie without any small intestine - they're not really useful. There is no miracle awaiting them at another hospital. If she even had a quarter of her small bowel left, then yes, different hospitals offer different treatments for bowel lengthening and thigns like that. But with absolutely NONE, there is nothing else anyone can do until the baby is big enough for transplant.

So very sad. I wish the family the best, and I hope that whatever happens to the baby, she is comfortable.

prmenrs, RN · Sep 18, 2006

I'm not sure if I can write a coherent post w/o being cynical, but here goes.

This poor baby is suffering because Mom [and Dad] are losing their "wished-for" child and are too grief stricken to deal w/the situation in a mature manner. The baby, unless there is a genuine miracle, will die. The question is when. It saddens all of us.

It is especially difficult, also, for the nursing staff taking care of this family. I'm hoping they are getting the support they need not to go home in tears every single shift.

The only thing I can offer is a prayer for resolution and comfort for the baby, the family and all who care for them.